Mood Disorders Society of Canada Mental Health Care System Study Summary Report

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1 Mood Disorders Society of Canada Mental Health Care System Study Summary Report July 2015 Prepared for the Mood Disorders Society of Canada by:

2 Objectives and Methodology 2 The primary objective of the Mood Disorder Society of Canada s 2015 Mental Health Care System Study was to identify priority issues and improvements or changes to the Canadian mental health care system that need to be addressed. More specifically, this study sought to gain a better understanding of the mental health care concerns among three stakeholder groups: Canadians who are currently living with a mental illness; Family members or caregivers of an individual with a mental illness; and Individuals concerned about the Canadian mental health system. The 2015 Mental Health Care System Study utilized an online methodology among members of the Mood Disorders Society of Canada (MDSC) and its partner organizations. Invitations to participate in the study were sent directly to the database of members by MDSC, and the survey was promoted through a variety of social media and other outlets. Respondents could complete the survey in English or French. In total, 2245 surveys were completed between June 16 th and June 27 th, Due to the nature of online research, a margin of error cannot be applied to the results. Note, where 7-point scales were used, positive ratings (top 3 box, scores of 5-7), neutral (scores of 4), and negative ratings (bottom 3 box, scores of 1-3) are used for analysis.

3 Table of Contents 3 Section Page Research Summary 4 Government Performance and Required Action 7 Public Attitudes Towards Mental Health 10 Experience with Mental Health 12 Experience with Treatment 22 Facility and Service Usage 31 Satisfaction with Services/Facilities 39 Appendices Survey Questionnaire Tabular Results A B

4 Research Summary: Highlights 4 The following highlights are derived from the results of the Mood Disorders Society of Canada 2015 Mental Health Care System Study: Mental Health Care System in Canada. Canada s mental health care system is perceived to need improvement overall. The provision of adequate, appropriate, and timely services to support individuals with mental illness, their family members, caregivers, and health care professionals is generally considered ineffective and are deemed critical areas of focus for the Government. Nonetheless, it is positive to note that progress has been observed over time in terms of public perceptions and attitudes towards mental health. However, this is not the case with respect to fair treatment of individuals with mental illness, as little change is noted overall compared to five years ago. Experience with Mental Illness. The majority of individuals have been dealing with mental illness for more than ten years, either first-hand or by providing care for someone experiencing mental health issues. The most common types of mental illness experienced include depression and anxiety disorders. For the most part, individuals live with family, although diagnosed individuals are more likely to live on their own compared to those experiencing an undiagnosed mental illness. Provision of Care. Health care professionals most commonly provide both medication and information about mental illness recovery/management, although a sizeable minority have received medication alone. On that note, access to required medications to treat mental illness is high, with cost being the primary barrier faced by those unable to receive the medications they need. Those who are able to access their required medications find them to be highly effective and report taking their medications as prescribed all or most of the time. Among those with an undiagnosed mental illness, the majority rely on friends/family for support in dealing with their symptoms, while some also search for information on the internet. Of greater concern is the finding that one third of those with an undiagnosed mental illness ignore their condition, or self-medicate. Accessibility of Treatment and Supportive Services. In general, facilities most often visited for mental health issues include community counselling centers, hospital emergency rooms, as well as various types of support services, while those seeking care due to mental illness are most likely to visit psychiatrists and family doctors, which are also the most likely types of professionals to have diagnosed a mental illness. Although nearly all of those experiencing mental illness have a family doctor, a notable proportion choose to see a different health care provider for several reasons, including a perception that their doctor is not the right person to talk to. Overall Perceptions. Above all, perceptions are largely positive in regards to the availability of community mental health organizations and the overall treatment of mental illness provided by family doctors and health care professionals. However, the availability of health care professionals, as well as the care provided in walk-in clinics and hospital emergency rooms warrant attention. Moving forward, efforts to improve the overall treatment of patients with mental illness in all health care forums should be focused around the degree of respect and empathy demonstrated by staff, addressing the perceived lack of prioritization of mental health patients, reducing wait times, and reducing the appearance of being rushed among health care providers during patient consultations.

5 Research Summary: Highlights Continued 5 Health Coverage. While the majority of those surveyed have both provincial and private health coverage, more than one-half believe their coverage is inadequate, including a greater proportion of those with an undiagnosed mental illness than those with a diagnosis. As well, those with provincial health coverage alone are more likely than their counterparts to face cost barriers to treatment. Indeed, throughout results several key factors are found to influence perceptions and experience of care, including health coverage, cost barriers, receipt of a diagnosis, and age. Cost Barriers. For the strong majority, cost is a significant barrier to access required supports and treatment. Those facing cost barriers cite lower access to medications, less effective medications, and more limited information provided by health care professionals about mental illness management and recovery. Meanwhile, a greater reliance on the internet and walk-in clinics is also reported by those facing cost barriers, as well as longer wait times to receive a diagnosis. Receipt of a Diagnosis for Mental Illness. For those yet to receive a diagnosis but are experiencing mental illness first-hand, several implications are also observed throughout findings in comparison to those with a diagnosed mental illness. Generally speaking, perceptions are less positive, and those without a diagnosis are less likely to have a family doctor. Interestingly however, two in ten have not used any health care facilities or services due to mental health issues. Age Differences. Several factors also appear to be influenced by age. In particular, those under the age of 30 years are more likely to be experiencing mental illness first-hand compared to their older counterparts. This is of particular concern given that younger individuals are more likely to face cost barriers to treatment and to believe their health coverage is inadequate, although younger individuals are less likely to consider treatment with medications an important service for those experiencing mental health issues. Of note, one-quarter of those under 30 years of age do not want to disclose their mental illness to their family doctor. Coping strategies for those dealing with an undiagnosed mental illness vary across ages. Specifically, younger individuals are more likely to ignore/deny that their mental illness exists, middle aged individuals are more likely to self-medicate, and older individuals are more likely to rely on friends and family for support. These findings suggest a need for greater access to support services, particularly for youth who are more likely to engage in maladaptive behaviours in dealing with their undiagnosed mental illness. Generally speaking, it is important to consider that younger individuals appear to be more sensitive to the overall treatment of patients with mental illness in health care settings, as they are significantly more likely to express concerns around the degree of respect and empathy demonstrated by staff, the prioritization of mental health patients, lengthy wait times, and feeling that health care providers rush through consultations. The infographic on the following page presents a summary of key findings from the 2015 Mental Health Care System Study.

6 Types of Health Coverage Several factors are found to have an impact on Including: perceptions & experience of care provincial and private 50% health coverage cost barriers receipt of a diagnosis age provincial alone 39% private alone 7% 89%! have provincial health coverage overall 57% CANADA S MENTAL HEALTH CARE SYSTEM 50% have a family doctor 88% receive both medication and information i 42% receive medication alone 82% 92% receive medication overall 58% receive information overall Concerns about the overall treatment of patients with mental illness in health care settings include: 91% 8% receive information alone take their medications as prescribed all or most of the time 21% Those who have not seen a family doctor about their mental illness say they do not feel their GP is the right person to talk to waited 1 year or longer for a diagnosis 60% Progress has been made say their medications are effective over the past years cost barriers to access required treatment have visited that family doctor to treat mental illness 38%! 94% overall face 77% were diagnosed immediately are able to access the medications they need 68% have a family doctor in their community that treats mental illness 87% 73% are more aware of mental health issues are more comfortable speaking about mental health issues with others of those with private health care overall say that the coverage is inadequate for the mental health care they need have private health coverage overall none 4% Gaps in access to treatment are found 54% The degree of respect and empathy demonstrated by staff A perceived lack of prioritization of mental health patients Lengthy wait times A perception that health care providers rush through patient consultations ½ or more see a need for improvement in Canada s provision of mental health care services So Where should the Government focus it s efforts? There are critical areas of focus: Accessibility of mental health care professionals Increased community mental health services Support for families 50% Increased funding are dissatisfied with the overall care provided at the Hospital Emergency Room and at Walk-in Clinics 56% 55% believe the stigma associated with mental illness has been reduced believe attitudes about mental health issues have changed for the better Coordinated Federal and Provincial mental health plan Allocating dedicated mental health funding But 71% believe people with mental illness are not treated more fairly Training mental health care workers Increased funding for coordinated mental health research Safe, affordable housing for persons with mental illness The 2015 Mental Health Care System Study was conducted via online survey among members of the Mood Disorders Society of Canada (MDSC) and its partner organizations. Invitations to participate were sent directly from MDSC to its database of members. In total, 2245 surveys were completed between June 16th and June 27th, 2015.

7 Government Performance and Required Action

8 Current Performance 8 Canada s performance in the provision of various services related to mental illness is perceived to need improvement. Indeed, the provision of adequate, appropriate, and timely services to support individuals with mental illness, their family members, caregivers, and health care professionals in Canada is largely considered ineffective. (Tables 39a-g) Perceptions of Canada s effectiveness in the provision of training and support for family doctors or other health care providers declines with age

9 Priority Areas 9 All aspects of Canada s mental health care system are considered critical areas of focus for the Government, particularly with regards to increasing access to mental health care professionals. (Tables 40a-i) Women place a greater degree of importance on all areas of focus compared to men

10 Public Attitudes Towards Mental Health

11 Perceptions of Mental Illness 11 The majority believe that strides have been made regarding public perceptions and attitudes towards mental health, however fair treatment of individuals with mental illness is a persisting issue. Most report greater awareness of mental health issues compared to five years ago. (Tables 38a-e) In terms of public perceptions of mental illness in general, younger individuals, those that have both provincial and private health coverage, and those who do not face the barrier of cost are more likely to have noticed progress Among those experiencing mental illness, diagnosed individuals are more likely than those without a diagnosis to feel comfortable speaking with others about mental illness and to believe attitudes have improved

12 Experience with Mental Health

13 Living Arrangements 13 Most of those surveyed live with family members, while a minority live on their own. (Table 4) Those with a diagnosed mental illness are more likely than those undiagnosed to live alone

14 Regional Breakdown 14 One-half of those surveyed live in Ontario, and four in ten live in Western Canada. (Table 5b) Status: West (n=798) Ontario (n=1107) QC (n=77) East (n=256) Diagnosed 52% 53% 39% 54% Not Diagnosed 20% 18% 10% 21% Family Member 7% 6% 10% 9% Caregiver 4% 3% 3% 2% Concerned Individual 18% 20% 38% 15% Mental Illness: Depression 66% 71% 70% 70% Bipolar Disorder 24% 22% 28% 23% Schizophrenia 9% 5% 5% 7% Personality Disorder 12% 10% 23% 11% Eating Disorder 10% 11% 5% 12% PTSD 20% 22% 10% 14% Anxiety Disorder 57% 62% 55% 59%

15 Experience with Mental Illness 15 A small majority of those surveyed have been diagnosed with mental illness, while two in ten are individuals concerned about the state of the Canadian mental health care system, or they are a family member of someone with mental illness. Under one in ten believe they have mental health issues, but have not been diagnosed by a health care professional, and fewer are caregivers of someone with mental illness. (Table 6) Those facing cost as a barrier to treatment are more likely to be diagnosed with a mental illness, while conversely, those without cost barriers are more likely to be a family member of someone with mental illness Women are more likely than men to have been diagnosed with a mental illness

16 Overall Experience with Mental Illness 16 Respondents were asked how else they would describe their experience with mental illness. When combined with initial responses, results show that one-half have been diagnosed with mental illness, or are a family member of someone with mental illness. (Table 6a)

17 Duration of Experience Mental Illness 17 For more than ten years, the majority have either been experiencing mental illness themselves, or have been caring for someone who has been experiencing mental illness. (Table 7) Those living alone have been experiencing mental illness for longer than those living with family or others, and those living with family have been experiencing mental illness for longer than those living with others Perhaps not surprisingly, duration of mental illness increases with age Three-quarters of those diagnosed have been experiencing mental illness for more than 10 years (73%), compared to one-half of those without a diagnosis (48%)

18 Diagnosed Mental Illness 18 The most common types of mental illness experienced by those diagnosed or caring for an individual with a mental illness include depression and anxiety disorders, while a notable minority also experience bipolar disorder, and post-traumatic stress disorder (PTSD), among others. (Table 8a) Anxiety and eating disorders are more common among women and individuals under 30 years of age

19 Undiagnosed Mental Illness 19 Those without a diagnosis from a health care professional most commonly report that they have been experiencing depression, anxiety disorders, or post-traumatic stress disorder. (Table 8b) Women and those under 30 years of age more commonly report an undiagnosed eating disorder

20 Health Coverage 20 Most commonly, respondents have coverage from both provincial and private health care, while a sizeable minority are solely covered by a provincial health care plan. (Table 9) 89% Have provincial health coverage 57% Have private health coverage Those with provincial health coverage alone are more likely to face cost barriers to treatment compared to those with both provincial and private health coverage

21 Adequacy of Health Coverage 21 Among those who have a private health care plan, alone or in combination with a provincial plan (representing 57% of respondents overall), over one-half believe their health coverage is not adequate for the mental health care required. (Table 10) Inadequate coverage is more commonly reported by undiagnosed individuals compared to those diagnosed Men, older individuals, those living in Eastern Canada, and those who do not face cost barriers to treatment are more likely to believe their coverage is adequate

22 Experience with Treatment

23 Provision of Medication and Mental Illness Information 23 Health care professionals most commonly provide both medication and information about mental illness recovery/management. That said, a sizeable minority have received medication alone. (Table 12) 92% Receive medication 58% Receive information Those with cost barriers to treatment are more likely to receive medication alone. Conversely, those without cost barriers are more likely to receive medication paired with information about mental illness recovery/management.

24 Management Information 24 Information about exercise, appropriate sleep, lifestyle changes, and diet/nutrition are most commonly provided by health care professionals for the management of mental illness. (Table 13) Residents of Quebec are less likely to have received information about diet/nutrition and hobbies compared to those living elsewhere

25 Time Taken for Diagnosis 25 The amount of time it took to receive a mental illness diagnosis varies widely, with some reporting that it took one year or longer, while others were diagnosed immediately. (Table 14) Residents of Quebec and those facing cost barriers report that it took longer to receive a diagnosis compared to their counterparts

26 Diagnosis Provided by Type of Health Care Professional 26 Overall, psychiatrists are most likely to have diagnosed a mental illness, followed by family doctors. (Table 15) Those with depression and anxiety disorders are more likely than those with any other mental illness to have been diagnosed by a family doctor A diagnosis from a psychologist is more common among younger individuals and those living in Quebec

27 Accessibility of Medication 27 Access to required medications to treat mental illness is high, although cost is the primary barrier faced by those unable to receive the medications they need. (Tables 16 & 17) Access to required medications is highest among residents of Quebec, while those with no health coverage and those who face cost barriers to treatment are least likely to be able to access needed medications

28 Effectiveness of Medication 28 The majority indicate that medication has been effective in treating mental illness to some degree. For those who indicated that medication has not been completely effective, the primary reason is due to persisting symptoms. (Tables 18 & 19) Medications are less effective for younger individuals, those living in Quebec, those with a diagnosis of schizophrenia, and those who face cost barriers to treatment Younger individuals are more likely to perceive medication as ineffective because of negative/too many side effects

29 Medication Adherence 29 The vast majority take their medications as prescribed all or most of the time. (Table 20) Family members and caregivers of someone with a mental illness are more likely to report that medications are taken as prescribed most of the time, while those diagnosed with a mental illness more commonly report that they take their medications as prescribed all of the time

30 Medication Information 30 Health care professionals generally provide information about medication side-effects and the length of time before medications start working. (Table 21) Individuals over the age of 50 years and those living in Quebec are less likely to report that their health care professional provides information about side-effects

31 Facility and Service Usage

32 Use of Health Care Facilities and Support Services 32 Individuals with mental health issues have commonly sought care at a community counselling centre/facility, hospital emergency room, as well support services in general. Peer support groups and community mental health organizations are the most common types of support services used by individuals seeking help with mental illness. (Table 22 & 23) Use of community counselling centres/ facilities and walk-in clinics is less common among individuals aged 50 years or older Two in ten individuals with undiagnosed mental health issues have not used any health care facilities or services due to mental health issues Those facing cost barriers to treatment are more likely to have used a walk-in clinic due to mental health issues Use of online forums decreases with age, and is more common among those without a diagnosis and those facing cost barriers compared to their counterparts

33 Importance of Mental Health Services 33 Access to care, counselling, psychological, and psychiatric services are most important for those experiencing mental health issues. (Tables 24a-h) Counselling, community mental health support, and community programs are more critical to women compared to men Treatment with medications is significantly less important to those with an undiagnosed mental illness and to those under 30 years of age compared to their counterparts

34 Cost as a Barrier to Care 34 The cost of required support and services is a prevalent barrier for those with mental illness. (Table 25) Individuals under 50 years of age are more likely to face cost barriers to treatment than their older counterparts Cost barriers are more commonly reported by those with provincial coverage alone compared to their counterparts with private coverage

35 Availability of Local Health Care Professionals 35 For individuals seeking mental health care in their community, family doctors and psychiatrists are most prevalent and most widely used. (Tables 26 & 27) Access to a variety of health care professionals that can help with mental illness is lower among those living in Quebec

36 Family Doctors 36 Interestingly, nearly all of those seeking mental health care have a family doctor. However, 88% recognize that a family doctor in their community treats mental illness (Table 26), of which, 77% have seen a family doctor in their community for mental illness (Table 27). This suggests that a proportion of individuals may choose not to see their family doctor for mental illness, or their own family doctor isn t believed to treat mental illness. (Table 11) Family doctors are less common among those with an undiagnosed mental illness, residents of Quebec, those without health coverage, and individuals experiencing or are caring for someone with schizophrenia

37 Use of Local Health Care Professionals 37 A minority have not seen a family doctor for mental illness, in large part because they do not feel he/she is the right person to talk to. (Table 28) The perception that a family doctor is not the right person to talk to is more common among younger individuals and those without a diagnosed mental illness. 25% of those under 30 years of age do not want to disclose their illness to their family doctor

38 Coping Without Mental Illness Diagnosis 38 In the absence of a mental health diagnosis, individuals without a professional s treatment largely rely on friends/family or search for information on the internet in dealing with their condition. (Table 29) Those under 30 years of age are more likely to ignore/deny their mental illness exists, while those between 30 and 49 years of age are more likely to self-medicate. Meanwhile, those aged 50 years or older are least likely to rely on friends/family. Those facing cost barriers to treatment are significantly more likely to rely on the internet for information compared to their counterparts

39 Satisfaction with Services/Facilities

40 Satisfaction with Services and Facilities 40 Generally speaking, respondents are satisfied with the availability of community mental health organizations and with the overall treatment for mental illness provided by family doctors and health care professionals. That said, the availability of health care professionals whenever they are needed is a concern for a majority of those who have received care from a health care professional. Meanwhile, those who have received care for mental illness in a walk-in clinic or a hospital emergency room commonly express dissatisfaction. (Tables 30a-g) With the exception of the availability of community mental health organizations, individuals facing cost barriers are generally less satisfied compared to those without cost barriers to treatment Satisfaction with available support services for those affected by mental illness decreases with age, while conversely, younger individuals are least satisfied with the overall care provided by both family doctors and health care professionals Compared to those who are diagnosed, individuals experiencing an undiagnosed mental illness are less satisfied overall, with the exception of support services available to those affected by mental illness

41 Dissatisfaction with Family Doctors 41 Those less than completely satisfied with the care provided by family doctors commonly report that the consultation felt too rushed and that patients with mental illness are not prioritized. (Table 31) Younger individuals and those facing cost barriers are more likely to feel that the consultation feels too rushed, patients with mental illness are not prioritized, and that the wait time to see a family doctor is too long Those facing cost barriers are more likely to cite concerns about the degree of respect/empathy of family doctor compared to those without cost barriers

42 Dissatisfaction with Health Care Professionals 42 Those who are not completely satisfied with the care they received from a health care professional commonly mention that the wait times are too long. (Table 32) The perception that wait times for health care professionals are too long, and that patients with mental illness are not prioritized is more common among younger individuals The top four reasons are more commonly cited by individuals facing cost barriers to treatment compared to their counterparts

43 Dissatisfaction with Walk-in Clinics 43 Most of those who have received care at a walk-in clinic are not completely satisfied, largely because of the degree of respect/empathy from staff and the perception that patients with mental illness are not prioritized. (Table 33) Younger individuals more commonly mention a lack of prioritization for those with mental illness, the wait times are too long, and that staff appear to be too rushed The degree of respect/ empathy of staff and lack of prioritization is more commonly mentioned by women, while men more commonly mention that clinic staff appear to be rushed

44 Dissatisfaction with Hospital Emergency Rooms 44 A variety of reasons are provided by the sizeable majority who are not completely satisfied with the care provided in hospital emergency rooms for patients with mental illness, including a perceived lack of concern for those with mental illness. Other areas of concern include wait times to see a health care professional, a lack of prioritization for patients with mental illness, the degree of respect/empathy of staff, as well as the amount of information provided by the hospital to the patient about mental illness and options for treatment/help. (Table 34) Older individuals are more likely to report that wait times are too long, while younger individuals more commonly report that the hospital does not prioritize patients with mental illness and that limited information about options for treatment/help are provided The top 8 reasons for dissatisfaction are more commonly mentioned by those who face cost as a barrier to treatment

45 Perceptions of Walk-in Clinic Staff 45 Walk-in clinic staff are largely considered professional and respectful. On the other hand, staff responsiveness and the provision of timely and efficient service are areas that are perceived to need improvement. (Tables 35a-d) Those facing cost as a barrier to treatment offer less favourable evaluations overall compared to those without financial barriers Younger individuals are more likely than their older counterparts to view walk-in clinic staff as professional and respectful Women are less likely than men to report that walk-in clinic staff are responsive and provide timely and efficient service

46 Perceptions of Hospital Emergency Staff 46 While hospital emergency staff are perceived to be professional, the majority feel hospital staff do not provide timely service. (Tables 36a-d) Once again, those facing cost as a barrier to treatment are generally less positive compared to those without financial barriers Diagnosed individuals are more favourable towards hospital emergency room staff compared to those with an undiagnosed mental illness

47 Perceptions of Health Care Professionals 47 Generally speaking, health care professionals are perceived to be professional and respectful. Meanwhile, a sizeable minority cite concerns about the provision of timely and efficient service among health care professionals. (Tables 37a-d) Generally speaking, women, and those who face cost as a barrier to treatment are less positive in their evaluations of health care professionals compared to their counterparts Among individuals with mental illness, those with a diagnosis are more favourable towards health care professionals overall compared to those who are undiagnosed

48 Additional Comments 48 Respondents were asked to provide additional comments regarding the status of mental health care in Canada. Common feedback speaks to the difficulty of accessing mental health treatment and wait times, as well as the need for more resources, services, and programs to help support people with mental health issues and their families. (Table 41)

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